Craniectomy: Life on Hold

Craniectomy: Life on Hold

After my husband, Hugh, was struck by a car while riding his bike home from a workout, doctors rushed him to the nearest trauma center and operated on his brain. The next day, because he responded to family voices, my daughters and I believed he was on the road to recovery.

Less than 48 hours later, Hugh was rushed back into emergency surgery when he developed a right subdural hematoma. This time, doctors performed a craniectomy; they removed a portion of Hugh’s skull to relieve brain swelling. This operation reduces damage to healthy areas of the brain by allowing the brain to swell without being squeezed; it can prevent death and improve outcomes. That piece of bone — about the size of half a grapefruit — was put in the hospital freezer. I was told it would not be replaced for at least three months, the time it would take for Hugh’s brain swelling to recede.

These three months were the longest three months of my life. In the acute brain rehab center, I was told that Hugh should wear a helmet on his head every time he stood up so he would not reinjure his brain. To compound my worries, Hugh felt dizzy, he was wobbly and often tripped when he walked, and he was cognitively impaired. As I waited for him to be “put back together,” I felt as if our life was on hold.

After three months, Hugh’s bone was replaced without incident; and within two weeks, he regained the use of his left side, his dizziness abated, and his balance stabilized. Somehow, having that piece of bone back in his head restored his equilibrium.

I recently talked to a man who went through a similar experience, but he had complications. Bob Gray was a Chief with the Arlington County Fire Department when the 9-11 attacks occurred. He’s known for leading his department’s Technical Rescue Team in its search for survivors at the Pentagon. After 30 years in the department, Bob retired in January 2011. Two months later, he had a freak accident. He sustained a TBI at home when he fell from a ladder.

During surgery, Bob also had a craniectomy, only his surgical site became infected several times. He had to have repeated operations to clean the area. Over the next two and a half years, he spent a lot of time on antibiotics. During his final bone flap surgery, Bob was in the hospital for more than a week. Doctors discovered that the infection had affected both his scalp and part of his skull. When they tested the bone, they found MRSA, a drug-resistant infection, in the bone piece, which could have been deadly. Now Bob lives with a prosthetic bone completing his skull.

Now that the surgery is over and he has finished his last dose of antibiotics, Bob is hoping he will continue to heal with no further setbacks. “This whole process has felt like one step forward and ten steps back,” he says.

Bob’s wife Lesli tells the same version of Bob’s story, but she includes many references to her own personal stress. Like me, she was told Bob should wear a helmet, and, like Hugh, Bob did not like wearing the helmet. The more mobile Bob became, the more worried Lesli grew. With each new surgery, Lesli felt like this would never end. She said, “We were all okay with the idea of a new normal, but it started to feel like even that was not a realistic goal.” Hopefully, Bob’s prosthetic bone has resolved the problems related to his infections.

Today, Bob is back to dedicating his time to Project Rebirth, an organization dedicated to facilitating healing, fostering hope, and building resilience among first responders, veterans, and other community leaders. He’s glad to be back to his active lifestyle. Lesli says that she’s okay with how he’s doing, but she feels anxious when he is doing anything (like cycling) where he might fall. “I am hoping that more time will reduce the Nervous Nellie in me!” she says.

There are two similarities worth noting in our stories: both Hugh and Bob felt more incapacitated when part of their skull was taken out (dizzy, out of balance); and both Lesli and I experienced a lasting sense of anxiousness. My anxiousness has lessened with the passage of time, and I hope hers will, too.

I’m also hoping that through our stories others may feel more prepared if a loved one should have to undergo this procedure and may not be alarmed if they experience similar setbacks until the bone is replaced. I’m grateful that Hugh had a craniectomy. It’s a life-saving procedure for sure. 

Comments (49)

My brother was on a scooter and hit by a truck on May 31st this year. His plate should be finished and surgery to replace the left side is scheduled November 6th. He has been in the hospital the whole time. He is no longer able to to make words and this gives me hope that once the piece is on he will improve. He won’t be able to come home but I hope for some quality of life for him. The stress and anxiety has been unreal for both my mother and me and there is still such a long road to go. Thank you for this post. I needed someone to relate too and how they handle this situation. We all have not gotten to move forward yet to what is the new life. Wow it is so tough. This gives me hope.

Thank You! My nephew undergoes Cranioplasty tomorrow just over 12 weeks post severe head injury. Your positive story has helped me. I understand feeling anxious!

Thank you for posting it definitely gives me some much need insight on the road ahead for my family.

Wow, all of these incredible stories. I was in a car accident 3 years ago (at 21) and rushed to the hospital for this surgery; doctors were predicting many different outcomes during my coma (none of which were very pleasing) to my family. There was a point in the hospital when I was literally on the verge of death, then the lord literally sprinkled me with another chance like the guy that got famous for sprinkling salt on the meat. Up and and out of the hospital in 3 weeks, helmet and all. 3 month later after the swelling went down got my surgery and prosthetic skull plate, no symptoms of anything at all. Made a vow to do spectacular things with my life as it is my duty to help others.

My brother went under the knife last Sunday, April 29th, for ruptured aneurysm. There was massive bleeding and it all happened so quickly. What happens after craniectomy? He still hasn't woken up. It's been days. What can we expect? We feel so helpless and afraid.

This is a nice post explaining a lot about life on hold. I really appreciate your efforts to do so. Keep Posting.

This is really inspiring. My husband was in a car accident September 11th. We are actually in the hospital now. He had his bone flaps put back in. But has been asleep since the surgery 2 days ago. So I do not know the improvements yet. I hope his success story goes as well as a lot of yours. I worry because some of his brain was damaged due to lack of oxygen to the brain before paramedics arrived. So we will see. Thanks for the inspirational story

I had a cranioplasty using an artificial bone flap. This was preceded by infection meaning that my original bone flap could not be used. The four months that I had to wait until the Doctor was happy that the infection was under control were difficult. Loss of balance, difficulty with speech, impaired mobility, the list was long.
I returned home today, the difference is remarkable. I can walk, talk, and I am looking forward to gradually regaining most if not all of my function.

My husband had a motorcycle accident in May of this year, he had a cranial removed on his left side 1.5 weeks after his accident, he was improving, needless to say, I was kept from him for almost 2 mos by his mother and she signed to ha e him moved with a broken shunt in his brain to another hospital, he had issues, they had to do surgery in hospital room and he developed staff, he has had 6 shunts since one being a permanent one. He had his bone flap replaced 2 weeks ago and he has gone lethargic because he has anair bubble and blood behind bone flap. Dr.is just waiting, I m very concerned. I don't kniw what to do, he still has trach in and I want them to try a talking trach but getting push back from his mother. Is this normal?

Hello, I am 22 years old and I received a craniatomy after I was in an accident about 2 months ago, and my skull has been replaced a week ago. My question is those who had loved ones in a similar surgery or anyone who's gone through this yourself, does anyone know that life will recover like it was before? Or will this be almost a disable for anyone who has gone through this.

Hello quick question. My boyfriend recently was involved in a really bad motorcycle accident. He had many problem such as fractured skull on one side along with face and bleeding on the other side of the brain. Along with broken ribs from chest compressions. He recently had the surgery to fix broken face bones which I find is a good start. Then about a week not even more or so 3/4 days later he was cleared to start rehab. He has amnesia and can not remember who I am. They think it may be short term. I was wondering due to the fact that I've seen almost everyone post the same length of time. Is it usually 3 months after a craniectomy does the bone flap go back or in general a doctor looks to see if it's ready to go back? I'm really curious if anyone can give me some sort of info on that because google and research in general hasn't shown anything. I just want to know if it's 3 months due to the fact that before this accident we planned to start a family that next week. Thank you again everyone for your time and help.

My husband was shot in the head on 12/31/16. Due to his brain swelling they removed his bone in his skull. He lost feeling on his left arm and weaknesses on his left leg. Reading these comments give me hope that he will improve once his flip bone is replace. I really hope so. Our life's is not the same waiting on his to get better

Hi everyone, I've had two craniectomies and since had to put my "life on hold" twice. The first was an emergency surgery to allow my brain to swell after I was hit in the head by a while playing softball.The second one was done to clean out an infection I got after my bone flap had been replaced. There was a brief period of time when I actually had a full skull before Then a mysterious infection hit my life Islas somehow become the x files. It's like a cruel joke that somebody is playing on me :( I now await my second cranioplasty without any idea of whether I will get back my own bone flap or a prosthetic. It's difficult to live with a bone flap I'm always paranoid about rolling onto my right side while I sleep. I'm also tired of wearing a helmet all the time.

That sucks. I had cranioctomy 13 years ago and recently sustained an infection. I now may have to have it done again. Hopefully, the science will improve to allow for alternatives to this rather harsh invasive procedure.

I saw your post and had to respond. I am a 29-year-old woman who is a year out of your exact situation. I suffered a subdural hematoma from a car accident, had a craniotomy with burr hole treatment (a straw basically draining your blood), but then it became infected with 5 staph infections after my staples came out.

I had the second craniotomy and washout one month after the first. I endured 3 months of IV Vancomycin at home after discharge but something felt awful in my head. I could literally feel the screws from my bone flap, pushing themselves out. I was in severe pain but was scared to go back to the original hospital! So I got a second opinion a county over.

Last June, 2015, a surgeon saved my life by believing in my concerns and went into brain surgery blind. No scans currently can allow our hardware to be seen accurately. In surgery, he found all the screws loose and and the bone flap destroyed, due to it hitting my healthy skull with every heartbeat. He performed a craniectomy and cranioplasty. Basically making a new bone flap, using pins instead of screws, and stapled it up.
You can overcome this. I am fully functioning now when before the 3rd surgery, I could hardly speak, had terrible short-term memory, and right-sided weakness. My saving grace was intensive outpatient therapy at a neurorehab outside of Detroit. 5 days a week, 5 hours a day, for 5 months. Today when meeting new people, they all say they would never have guessed all that happened by how I present myself and speak. The 3rd surgery changed my life for the better, as I know it can do for you!

What exactly do you mean by "regained the use of his left side"?

I am trying to post again...to the woman concerned about having the surgery and being home with your young son's. You are sent home with in just a few days. Your first few days home you are in need of some help from your family but you will be home with your family and very coherent when not on pain meds. I had a bit more than the craniectomy done but I am feeling so much better. Don't prolong your surgery. Symptoms can stay the same or worsen. No one knows when this can happen and for me personally I did not want that risk.

To the person who most recent posted about concerns to return back home to her two young children. I had this surgery 1/31/17. I was home 4 days later. The first 3 or 4 days I needed assistance from my 3 grown son's and husband. Week two I was able to be up and around. You can't lift the children or a gallon of milk at this time but you will be home with your children.

My wife after 11 years had to have her bone flap re-removed after replacing it. If I would have known back then I would have never had the use the same bone flap. Our neurosurgeon said it is safest to have a Prosthetic to replace it. I can tell you that the last three months have been filled with her fighting a infection and about five weeks in the hospital. Her bone flap was just replaced and and just overnight what a difference it has made having her whole again. No more nausea spells and balance issues.

I suffered a ruptured brain aneurysm in October while seven months pregnant, (thankfully baby survived the surgery and was born in January). During surgery I suffered a stroke and lost function of my left hand, and doctors could not put my bone flap on my right side due to the brain being swollen. Now I'm just waiting for a second surgery to put my bone flap back in. I'm nervous about it because I have no idea what to expect for this surgery and don't want to be in the hospital for too long away from my two sons who are two years old and a newborn. I know medical advise can't be given but if someone who went trough this surgery could comment? I will be checking on new comments. Thank you.

I had 3 brain aneurysms in 2006, had brain surgery and 2 months later MRSA infection. I just had my 11th surgery on Dec 6,2016 because of another infection that after almost 5 yrs set in. Now no skull again, home on vancomicin picc and waiting for surgery #12. Let's hope this will be my last? Chins up and move on, keeping a positive attitude also can help.

I feel your pain. I am awaiting my 9th surgery next June 2019 to replace my skull plate. Brain tumor surgery 3 times then infection, plate rejection, antibiotics, titanium back in and another infection, wash outs, infections.....Crazy time in my life yet I am very Thankful for my life even as it is. I have a wonderful team of MD's at JHU , loving family & friends and a God who loves me and has this in His Big Strong Hands. Hang in there and yes Attitude is everything!!!!

I've had the same surgery. The neurologist told my mom the same. In 3 months the swelling will go down and then bring me back so they would put the bone back to my skull. The funny this is, they didn't put the bone in any freezer they slit above my right abdomen and put the bone there for healing. I went back 3 months when the swelling went down but the docs told me they couldn't do it because I didn't have health insurance. That was in '04. I finally had the second surgery in 2010. Imagine living like that.

I had both surgeries - first for a subdural hemorrhage, then 2.5 months later I received my bone flap. When I had my "partial skull" everything was a challenge. Eating hurt because it hurt to move my jaws, cold was an instant brain freeze, hot food was an instant headache, riding in the car was a nightmare - my brain was a loose egg flying around with every slight movement. The subdural hemorrhage caused brain herniation so by giving my brain room to work it all out, that issue corrected itself. When I got my one flap back it was as if someone snapped their fingers and I was all well physically anyway. I was out of the hospital in a tad bit under 46 hrs. Mentally it is a bit slower, but doc is referring me to some counseling. My Hubby too put our lives on hold while I recovered. Truly an amazing procedure. It has been just a bit over 6 months since the brain nightmare, and 4 months since the bone flap fix. I am now all better.

Hello...I have a friend who is now as we speak under the hands of surgeons going thru a craniectomy. She is so young, only in her twenties. She was a passenger on a motorcycle accident and was his by another on coming car. She is in a coma and has had severe brain pressure, with 6-7 skull and face fractures. I pray this will ease the pressure for her brain and help her recover. She is a sweet soul. ...

Hello there,
My brother is going back to get his skull cap back tomorrow after it had to be removed to relieve pressure after his kite surf accident. He was in coma for a while. But luckily things worked in favor for him. He has been in rehab since and has done great progress. But yes for us it feels like life is on hold. We are hoping so much that all goes well and that the closure will give him some of life quality back. 

I'm new here. I had brain hemorrhage/stroke the end of May 2016. One minute I was at the airport getting ready to fly back home to Alaska after a routine stenting of an anuerysm. Next minute I was between hallucinations and in and out of consciousness. Turns out my brain hemorrhage and stroke where huge. Fortunately my left side was paralyzed and I was fit and am right side dominant so I've been recovering very well physically but came here looking for recovery stories. Thank you all for the positive cognitive recovery stories. They've given me ton of hope and a very positive outlook on getting my skull cap put back on in November. Thank you Tammy

hi everyone i am looking up the procedure of craniectomy because my friend just recently had one and he has been in an induced coma for about 4 days now, how long before he will wake up if he ever does? 

My husband is having replacement done in the morning. I hope he does as well as some of you. He is worried, but have read him the encouraging stories. Thank you for telling them.

My dad under went a craniectomy last night following a stroke. We aren't getting many answers from physicians about long term because I guess they can't be too sure. Reading this is encouraging that these men are starting to get back to themselves.

I am a craniectomy survived of 34 years when I was 8 I had a nail go thru my skull from a fall I got rushed to the emergency room and the doctor tried to clean the wound but didn't do a good enough job. He stitched me up and sent me home a year later I developed an infection on my brain. I complained about headaches, dizziness to my parents but they thought it would go away. It got so bad that i started pus and blood in 5 areas of my head and scabs that I scraped off then my parents knew something wasn't right so they took me to the hospital not making the connection to the nail accident a year prior and they didn't know what to tell the doctors they placed me in quarantine and isolated from everyone I felt like the boy in the bubble and I was scared. They ran test on me and told my father that they think they caught it in time To save my life. I they did the craniectomy in five different places on my head and I remember after the surgery it was itching so bad I actually put my own fingers in the holes in my head for some relief then when I notice I had craters in my head I wanted to see because I was a kid and I wanted to know what they did to me ... I went to the bathroom and took the bandage off and I will never forget what I saw ..all I can remember saying is I wonder it would ever close back up.... I never remembered the second surgery to replace the bone flaps back but the next time I looked after I got out the hospital everything looked almost normal.then I vowed to never talk about this to anyone in fear of it coming back .......so for 34 years till now am I able to speak about this openly Thank you ....Tai

Yes my children's father had fallen from a construction building, a piece of his skull as been removed

My daughter was in a car accident 10/31/2014. She had a craniotomy with bone flap replacement a few weeks later. Now 15 months later she said she feels an indentation & a screw feels like it's coming out. Has anyone else experienced anything like this?

my question is this. 4 months ago while riding a motorbike apparently i crashed and the hospital had to remove one side of my skull due to swelling.I have recently had said part put back in here in Hanoi.I feel good though in the mornings i feel depressed and full of anxiety. It has been about 10 days since operation. Is it normal to feel frightened to go out?

I'm praying for everyone with this issue I know what's it like! My son needs prayer November 19 he is getting bone flat back please pray everything go well for him his name is Malik.

In February 28, 2015 my 11 year old son Andrew had a ruptured AVM and was rushed to the hospital where he received life saving brain surgery.  They removed a large portion of his skull to operate and relieve the pressure that had built up in his brain.  We were told that he would have mobility issues and that they couldn't tell us how much other damage it had caused until he woke up.  I am glad to say that Andrew is a miracle, the only way you can tell something happened is because he has to wear a helmet until his bone flap is replaced.  They have decided not to use his bone for one reason or another and a piece has been made.  We have just been told that Andrew will have his surgery on November 26th.  I was wondering if anyone can tell me if they have experienced this and what we can expect for his recovery for the replacement of the bone flap.

Nadine (nvermeulen@abacuspe.com)

God bless everyone of you. My son too was hit by a car at 16 in 2007. He suffered severe TBI and after about one and a half days after being placed in the icu had reached the "worse case scenario" that the doctor didn't think would happen just one day before. Until reading up on this stuff tonight I did not really realize just how close my son came to death. I just read that 50% of the people who have craniectomy surgery die. I have also read that they say the outcome of people who have this and survive is really no better than those who have had standard medical care with no operation. I truly do not believe that. Of all the people I have heard of that did or didn't have the surgery the disablement seems to be worse in those who don't have surgery. I don't know how they can compare it anyway because most of the people who have it are at the point of surgery/death. So if they didn't have the surgery and died how can you compare that? All I know is I thank God for my son's survival and your survival and for those who have lost the battle. God bless your families. I feel in my heart if they had not done the surgery on my son he WOULD NOT be here today And if there was any chance He survived he would not be the Jerame that he was before the accident the way he is today. He came through with very little brain damage And really is slightly different than before. I owe all of this to God who gave the doctor the wisdom to do this surgery, the excellent doctor who performed it, the nurses who watched him around the clock without ceasing and let the doctor know exactly when his pressure became too high, and the fact that the surgery was done immediately to prevent more swelling and damage. I guess what I am saying is this surgery is a miracle from God. We all I'm sure are very thankful for the chance to have our loved ones back and I thank you God for your blessings.

Hi everyone. I am new. My 5 year old had a craniotomy a year ago. He fell off the bed and had an extra dural heamorage. My question is how safe does he need to be now. Relating to sports and accidentally bumping his head. What are the risk and time frames after TBI?? Please advise me if possible. I am being a helicopter mom and driving myself insane. Mail me if possible! magsstrydom@gmail.com

My son had a mva in aug 2011, he had a cranietomy. His sight too became infected after five operations they decided to leave him without that part of skull.( about as 10cm in diameter) the fear of him living like this drives me insane! To make things worse he has developed epilepsy. He refuses to wear a helmet, and even plays cricket! He says he would rather die on the cricket field than not play. As a mother i live in constant fear!

Has anyone been through this procedure or similar and thought you were fine, only to discover 10 years later cronic migraines, sleep apnea and cognitive memory loss. My son had a tree fall on his head at 20 ...lifeflighted for surgery and at age of 29 started have migraines with weekly syncope episodes. Only answer to pain is opiates which has a whole new set of problems

Was hit by a U- Haul Truck in 2001 when I was 18 years old. Was drunk and walking on a street with 50 mph speed limit, Fighting with my girlfriend and the next thing I remembered was lying in ICU with my friends and family around me.I thought I was an idiot until 3 months later my girlfriend told me she was in the street and i ran and pushed her out the way and got hit by passenger window at about 60mph. She said  I flew 15 feet high and 20 feet across. The EMTs told my girlfriends dad I was DOA. 3 months no skull.Never wore a helmet. Scar is the size and shape of a horseshoe. No real bad side effects or memory loss.Thank you Jesus for not taking me and saving my life

My daughter's bone was frozen for 3 months and then put back in but 6 months after that it didn't feel right so I brought her to the neurosurgeon and the CT scan showed that it was being re-absorbed. So she had to have (what was left of it) removed and a prosthetic piece put in. If I had known there was a chance of it re-absorbing I would've insisted on a prosthetic the first time. It was very difficult to have to go through more surgery and hospitalization again a year after her injury.

I had my brain injury after falling from a ladder in Oct. 2003. Had a craniotomy 2 day's later, needed to wear a helmet for 4 months before they were able to place my "bone" back in.  I hated, hated, hated wearing that helmet, but thought that one brain injury was enough for me so I wore almost all the time... but not so much when I was at home. My wife say's that when the bone-flap was placed back on my skull I was 100 times better as I was able to process, see and think much better.  RJ

Thanks for the piece and sharing your stories. It is encouraging that there have been some promising progress in the surgery to replace the bone flap, which may greatly reduce the risk of infection and result in better aesthetic appearance. This study was just presented last summer: http://www.sciencedaily.com/releases/2014/02/140203122833.htm

http://journals.lww.com/neurosurgery/Citation/2014/06001/Multidisciplinary_Approach_for_Improved_Outcomes.3.aspx

The helmet.... I loved and hated that thing at the same time.

Totally can relate to this. My wife got hit by a car crossing the street the end if August and the replacement titanium skull piece is scheduled for February 2 weeks away. I sure hope we only have to go through this once as I am beyond anxious! More like PTSD symptoms for me!  I so miss my wife and hope this provides another piece of this puzzle and Merry go round that won't stop! Thank you for taking the time to share!

Dear Dana, I'm so sorry for your loss. Thank you for your comment. I wish you peace. Rosemary

Our GOD has enabled... life after a Craniectomy is a New Beginning for the Patient, Family and Friends. He has enabled everyone involved to accept the challenges, changes and applicable restrictions of the Patient, so therefore we must adjust given the Divine ability to do so. Never and I mean NEVER GIVE UP.

Hi Rosemary,

I'm Dana from Buenos Aires. I've just read your post and I'm glad both Hugh and Bob are having a second chance in life. A very good friend of mine, Pablo, wasn't that lucky. He had a TBI at the end of last July and after fighting for 4 months he finally died of sepsis. He was only 37 and had two kids. I know what you're talking about when you mention setbacks. I somehow find comfort when reading stories like Bob and Hugh's. My friend couldn't make it but many others are still here, fighting and alive. And that's good. I wish you all the best.

Dana